Misery Loves Company

[Avalon451]

This has to be one of the classic 7 stages of celiac grief (or awareness, or whatever)! First you don't quite believe it, then you start researching it, you deny it, you rage, you grieve, you accept... then you diagnose everybody and their dog with the same thing as you.

Anybody else do this when they were first diagnosed? You start to see celiac symptoms in everybody. Not only my family (who, as per typical, aren't interested in getting tested themselves) but also lots of friends and neighbors, and friends of my kids. It's kind of funny how you suddenly feel like you're an expert (NOT) and want to yell at your neigbhor, "Woman, can't you see you and your kids all have celiac??? You're depressed! Your kids are short and zitty and ADHD!"

Of course, I'm keeping my mouth shut till I get my own issues somewhat sorted out.

[Chopper]

Your post made me laugh. I went through a lot in 2011 with 3 different auto-immune diseases and I felt like I could diagnose anyone! Especially after watching every single episode of Mystery Diagnosis! LOL!

Chopper

[love2travel]

  On 1/26/2012 at 9:24 PM, Avalon451 said:

This has to be one of the classic 7 stages of celiac grief (or awareness, or whatever)! First you don't quite believe it, then you start researching it, you deny it, you rage, you grieve, you accept... then you diagnose everybody and their dog with the same thing as you.

Anybody else do this when they were first diagnosed? You start to see celiac symptoms in everybody. Not only my family (who, as per typical, aren't interested in getting tested themselves) but also lots of friends and neighbors, and friends of my kids. It's kind of funny how you suddenly feel like you're an expert (NOT) and want to yell at your neigbhor, "Woman, can't you see you and your kids all have celiac??? You're depressed! Your kids are short and zitty and ADHD!"

Of course, I'm keeping my mouth shut till I get my own issues somewhat sorted out.

A big resounding YES. I went through every single stage you mention and thankfully am at acceptance. However, I still diagnose everyone around me! That may never go away. My Mom clearly has celiac (seriously - she has about 10,000 symptoms) but she will not get tested beyond her negative bloodwork. However, she would not be one of the rigid careful celiacs - that is not her personality. Anyway, I've jokingly diagnosed many and seriously diagnosed several. It's so OBVIOUS, isn't it?

Thankfully we are diagnosing as many doctors aren't! Except for mine - he is one of the good ones.

You will get there - you really, really will. It seems hard to believe at first but it is true. I am speaking from experience. I was so much in denial (I wanted to continue eating my beloved gluten) that I did not believe my overwhelmingly positive blood test results. Then my biopsy came back positive - I still refused to believe it. In fact, I asked my doctor to make sure it was my name on the report! Then it slowly started to sink in.

Now, ten months after being strictly gluten free, I have accepted it and it is part of my daily life. And this will happen to you, too. It will no longer be first and foremost in your mind. You will not be consumed by it. When you do research on it, it will be for other reasons.

So, you can truly look forward to a great life even with celiac disease!

[MitziG]

Your post made me laugh too! I keep joking that I am going to start grabbing random strangers and forcibly drawing blood to run Celiac tests on. At least I am MOSTLY joking. It's not a TERRIBLE idea....

[jeanzdyn]

I did not have the 7 stages of grief. I skipped denial, because when they said 'gluten intolerance' I was not at all surprised. and I am really relieved because I have had symptoms for so very long (more than 20 years), and no doctor would ever even try to figure out if the symptoms were related in some way.

I will admit, however, that I have spoken with a couple of people who I think should be tested for celiac disease. They have many of the same symptoms I have, but neither of them would ever even consider giving up any food item. Anyway, to each his own.

[kareng]

  On 1/26/2012 at 9:24 PM, Avalon451 said:

. then you diagnose everybody and their dog with the same thing as you.

Don't forget thier cats!

[domesticactivist]

Yup. That's part of the reason I started blogging. I could tell my friends all about evil gluten (and processed food, and sugar, etc) without having to direct my fervor at them over and over. It seems to be working. The people around me come and ask now

[eatmeat4good]

I wish I had run into someone like you when I was so sick for so long. I even remember hobbling through the grocery store late at night because I drove like I was drunk so I had to go to a 24 hr. store late at night to keep from being in traffic. Anyway, as I was hobbling through the grocery store I glanced at the gluten free food and saw the price and said a small thank you to God that at least I didn't have THAT problem. OMG!!! I did too have that problem. I didn't even know what THAT problem was. I didn't even associate gluten with Celiac. I was so ignorant of this disease. I wish for the day when clerks say "hey...you look like you might have Celiac..." It would have saved my life..or at least 7 eyars of it. Tell your neighbor....she may well appreciate the information. Or at least mention what is working for you and let her figure it out.

I had started avoiding all preservatives and salicylates thinking that must be it. A co-worker said to me one day, how is it going avoiding gluten? I said Gluten? I don't avoid gluten....it's about the ONLY thing I'm not allergic to! That day I went home and googled gluten...and found Celiac.com...and the answer to 7 long years of being sick, sick, sick. Took my symptoms and the word Celiac Disease to my Dr. and asked if this may be what I have. He said, "yup. I bet that is what you have...." After giving me Lyrica for fibromyalgia, pain pills for migraines, Promethazine for nausea, and telling me to take Immodium AD every day for diarrhea. Oh yeah, and Zoloft and Xanax for depression.... Yup, I bet Celiac is what I have doc...thanks for everything.

If one in a hundred have the disease and 90% of them don't know it and Dr.'s aren't diagnosing it, then word of mouth is the only way. I tell my friends to tell their friends and their kids and their kids friends and their kids friends parents. And if I hear of anyone with "Fibromyalgia"...I write a note about Celiac.com and have their friend give it to them. I tell people in the grocery store. One guy was shopping for his wife and said she had been sick a long time...I asked what she had....headaches, muscle weakness....etc. He said he tried to understand but she never gets any better. I said try Celiac.com...dug in my purse and jotted it down for him. I often wonder if that was her problem. Anyway, there are exactly 11 gluten free people in the world because I see Celiac everywhere and I talk about it when I can without being overbearing.....and they diagnosed themselves because their Dr. couldn't or wouldn't.

So I say Rock On!!

And Talk On!!!

Celiac.

It IS Everywhere!!

[beebs]

haha - I do that - think everyone has celiac I mean! !

[Duhlina]

I was watching a Dr. Oz that I had DVR'd yesterday and there was a woman on complaining of bloating and terrible gas and I started SCREAMING at the TV to TEST HER FOR CELIAC! I'm with you when it comes to that! I wish EVERYONE had to be tested!!! I think Celiac is definitely becoming more mainstream and a lot more people are aware of it, so hopefully the undiagnosed ones will figure it out like we did. But yeah, there are a few people I'd like to drag to the doctor kicking and screaming and draw their blood myself because they just won't go no matter what I say!

[Simona19]

I'm like everybody here, trying to diagnose everyone. My family doesn't want to get tested at all. Nobody wants to give up gluten. My friend have been having a major problem with his knees. I think he got the inflammation in the joints. He is taking injections for it every two weeks. His doctor told him to try gluten free diet. Yesterday I asked him, how he is doing on the gluten free diet. His answer was: That thing isn't doable. No way that he would be able to follow gluten-free-diet. He also admires me and my husband for staying on gluten-free diet for year and half.

I also screamed on my TV. I saw ones an episode of The Doctors where was one man complaining about gas problem. He was bloated every day. His girlfriend was annoyed buy it. The Doctors advise was a BLANKET that is blocking the smell becuse he is farting in his sleep under covers. Nobody even mention the possibility to get tested for something like celiac disease, lactose or fructose intolerance, etc. Wow!

[Kamma]

  On 1/27/2012 at 1:25 AM, eatmeat4good said:

I wish I had run into someone like you when I was so sick for so long. I even remember hobbling through the grocery store late at night because I drove like I was drunk so I had to go to a 24 hr. store late at night to keep from being in traffic. Anyway, as I was hobbling through the grocery store I glanced at the gluten free food and saw the price and said a small thank you to God that at least I didn't have THAT problem. OMG!!! I did too have that problem. I didn't even know what THAT problem was. I didn't even associate gluten with Celiac. I was so ignorant of this disease. I wish for the day when clerks say "hey...you look like you might have Celiac..." It would have saved my life..or at least 7 eyars of it. Tell your neighbor....she may well appreciate the information. Or at least mention what is working for you and let her figure it out.

I had started avoiding all preservatives and salicylates thinking that must be it. A co-worker said to me one day, how is it going avoiding gluten? I said Gluten? I don't avoid gluten....it's about the ONLY thing I'm not allergic to! That day I went home and googled gluten...and found Celiac.com...and the answer to 7 long years of being sick, sick, sick. Took my symptoms and the word Celiac Disease to my Dr. and asked if this may be what I have. He said, "yup. I bet that is what you have...." After giving me Lyrica for fibromyalgia, pain pills for migraines, Promethazine for nausea, and telling me to take Immodium AD every day for diarrhea. Oh yeah, and Zoloft and Xanax for depression.... Yup, I bet Celiac is what I have doc...thanks for everything.

If one in a hundred have the disease and 90% of them don't know it and Dr.'s aren't diagnosing it, then word of mouth is the only way. I tell my friends to tell their friends and their kids and their kids friends and their kids friends parents. And if I hear of anyone with "Fibromyalgia"...I write a note about Celiac.com and have their friend give it to them. I tell people in the grocery store. One guy was shopping for his wife and said she had been sick a long time...I asked what she had....headaches, muscle weakness....etc. He said he tried to understand but she never gets any better. I said try Celiac.com...dug in my purse and jotted it down for him. I often wonder if that was her problem. Anyway, there are exactly 11 gluten free people in the world because I see Celiac everywhere and I talk about it when I can without being overbearing.....and they diagnosed themselves because their Dr. couldn't or wouldn't.

So I say Rock On!!

And Talk On!!!

Celiac.

It IS Everywhere!!

I would have to agree with you, eatme4good. My neice was diagnosed with celiac some years ago. My brother and his wife are standoffish and didnt disclose much or really connect with the rest of the family about it. My mother displayed all of the neurological affects of celiac and spent years in bed with vertigo, depression, fogginess and overwhelming fatigue. Her last ten years were spent like that coupled with the sad descent into thinking it was all in 'her head'. One of my other brothers has the full gluten ataxia thing going on and it's progressed to where he's in about the same place as where my mother was.

When I stumbled upon how gluten affects the cerebellum I let my brother know and hes in the process of bringing it to his doctors attention.

I think its good to bring it to peoples attention. Even if they shrug their shoulders and roll their eyes, maybe somewhere, sometime down the line when they have symptoms that motivate them to seek help, they'll remember what you told them and have an easier time of finding an answer. My brother (father of my neice) was very irresponsible and dare I say it? Selfish. He could have alleviated alot of suffering if he had just spoken up.

[Skylark]

Yep, I about drove my mother crazy telling her she needed to be off gluten. Turns out I was right.

The funny thing is that if you are open about your diet and how great it makes you feel, your friends will start to wonder about it. I have two friends plus my mom who learned about the diet from me and discovered they were gluten-sensitive too.

[desperateforhealth]

Hahaha... I have been doing this as well... not out loud, just inside my head.

[lucky28]

Ha, I'm doing the same thing in my head at work all the time. I know of at least 3 ppl I work with on a daily basis that have symptoms probably related to celiac. One who is my son's age (mid20's) has low vitamin D, exhaustion, achy joints, especially knees, constipation (we all share tmi where I work!LOL). Then there are 2 women with fibromyalgia, constipation/D, psoriasis, etc, etc. I want to hold them down, draw their blood and send it to the lab myself. But they are all overwhelmed with just my diagnosis and are constantly making comments about my "weird" food (really, what's so weird about a banana with almond butter for breakfast anyway?)

I wish I could just show how much better I am gluten-free but I can't I still have unresolved GI issues that plague me, even though some of my labs like vitamin levels and liver enzymes are back to normal. So in the meantime I just drop little facts here and there and hope that they will "see the light" on their own.

I was glad to see this post and to learn I'm not alone in my seeing celiac everywhere! Thanks

[researchmomma]

I see gluten intolerance everywhere. Whether Celiac or not. That is the frustrating thing for me. My doc won't even consider a Celiac diagnosis without the genes despite all the major symptoms and medical proof that some just don't have those two little genes. We don't need a Celiac diagnosis! No big deal, it would have been so refreshing if the GI recommend a gluten free diet for someone with all the symptoms but no genes!!!! Just to see if it works. Right, most GIs don't believe in gluten intolerance.

I see IGNORANCE everywhere.

If it weren't for this board/forum, my daughter would be a huge gluteny mess.

I am shocked that people think I am crazy for making such a big change to our lives by removing gluten. Really? I think they haven't had a child sick since the day she was born with every individual diagnosis you can think of.

I can't wait to educate our neurologist! Maybe he will start seeing Celiac or Gluten Intolerance wherever he looks!

Love this thread because I want to shout: just try it, you may notice symptoms disappearing.

BTW, we put our dog on a gluten free diet because I didn't want gluten dog food in our house. All his "hot spots" are disappearing. I love it!

[Melissa Palomo]

LOL! I did make my dad get tested via blood test (it wasn't positive) but I also feel like the awareness is so lacking for Celiac that I end up telling everyone about it because I don't think anyone should suffer in silence any longer than they need to. If Celiac weren't grossly underdiagnosed, I'd probably let the doctors do their thing... but I can't so I keep sharing.

[heidi g.]

Haha this was funny! I kept trying to diagnose my little brother who has the same symptoms as me and as well has my mother. My mother is convinced its all anxiety but I think it's both. I was in several denial when I first found out and I still get like that. But I will always eat gluten free because I'm too chicken to risk hurting my belly!